Would you make your DNA and health data public if it may help cure disease?
The 39-year-old Toronto professional is the brave or, perhaps, foolhardy Canadian volunteer who will be first to go public this week in a project that will reveal the coded secrets hidden in her genome, the six billion chemical units of her DNA.
They may include not only her susceptibility to diseases such as cancer but the levels of her propensities to alcoholism, depression or obesity, or even personality traits such as risk-taking. She will also provide the personal context required to make sense of the biological data – her age, height, weight; medical records; details about how she lives, works and plays; and even her photo if she’s game.
This information – everything but her name and address – will be placed on an online database that will be open and available to anyone in the world. Even in this digital age of perpetual show and tell, exposing oneself so completely amounts to a molecular full monty: Even without a name attached, any participant might be identifiable.
Ms. Davies is making a leap of faith that at least 100,000 of her fellow citizens are also being asked to take – even though Canadian law has no strict guidelines on how this confidential knowledge might be used or misused by any insurance company, employer, police force or identity thief.
I work with confidential data all the time, sometimes the stuff I work with does have names and addresses, and let me just say that when you go through thousands of files, remembering anything specific is really rare. I need access to confidential data relating to healthy behaviours to do research to help improve peoples lives - having data already available makes things so very much easier research wise. Can this data be misused? Of course. But I worry about that so much less after working on the other side of things. The reality is it is pretty difficult to misuse these types of data, and much easier (though still somewhat difficult) to use it for beneficial activities like research.
